The complexity of sharing life expectancy prognoses with cancer patients is highlighted, alongside the impact of such knowledge on their well-being and choices. Research indicates a divide in patient preferences regarding prognostic information, with some desiring clarity while others prefer to remain unaware.
Dutch doctoral research reveals that a third of patients with metastatic cancer prefer not to know their life expectancy, while two-thirds wish to be informed. The impact of knowing or not knowing a prognosis is examined through the experiences of two individuals, Gerlies Nekeman Horsthuis and Mirjam Oomens.
Horsthuis, who opted to know her prognosis, found that it allowed her to prepare for the end of her life and appreciate the time she had left. In contrast, Oomens regretted seeking a specific prognosis after witnessing its negative effect on her husband, who declined rapidly after learning he had only weeks to live. She also experienced anxiety and difficulty moving forward after being given a probability of recurrence.
Doctors often hesitate to share exact prognoses, as they acknowledge the difficulty in predicting outcomes and the potential for survival figures to be misleading. Oncologist Hans Westgeest explains that survival figures are based on median values from medical studies, which may not accurately represent individual cases. Additionally, Patricia Hamers found that survival figures from medical studies are often more optimistic than those observed in real-world data due to the selection of healthier patients in research.
Efforts are underway to improve the accuracy of prognoses by incorporating real-world data and individual patient characteristics. Hamers suggests that tracking cancer mutations and metastases in the Dutch Cancer Registry could enable more personalized predictions.
The importance of carefully considering the language used when discussing prognoses with patients is emphasized, noting the potential for the nocebo effect, where negative expectations can worsen outcomes. Mirjam Oomens and gynecologist-oncologist Cor de Kroon co-authored an article in a medical journal discussing the added value of knowing as precisely as possible when you will die and since then de Kroon has changed his consultations.
Professor Andrea Evers is conducting research on the nocebo effect at Leiden University, where Oomens is a guest researcher. De Kroon acknowledges the importance of protecting patients and now asks them why they want to know their prognosis and how it will improve their quality of life. He also informs them about the nocebo effect.
Oncologists are increasingly adopting a more cautious approach to sharing prognoses, offering patients a range of scenarios and focusing on short-term goals. Hamers conveys the message without being too precise and Westgeest focuses on a time frame a few months ahead.
Gerlies Nekeman Horsthuis expresses satisfaction with her doctors’ honesty, stating that she can handle and appreciate it. In contrast, Mirjam Oomens, now cancer-free, has distanced herself from the patient role and embraced her individuality.
Lastly, the article explores the last wishes of terminal patients, highlighting that they often involve simple pleasures and connections with loved ones, rather than extravagant adventures. Petra Peters, wish coordinator at the WensenAmbulance Noord-Holland, emphasizes that the focus is on people and places that bring happiness.